How to get a seat on the bus/train with invisible MS fatigue

[JBWInColorado]

I take the lightrail to work. Sometimes in the mornings it is packed - nowhere to sit!! And if I stand all the way into downtown (about 25 minutes) I will just fall over.
This fatigue is invisible... what to do? "Hi, I have MS - can I have your seat?" I'm too shy for that.
Sure, there are disabled accessible seats but they're always taken and if you don't have a cane or wheelchair, folks don't move.
Anyone else have this problem?

[Picture me]

Be bold!

I had a similar experience. I has having difficulty opening a very heavy door to a store on a windy day. The clerk sat there and watched me struggle for a good 5 minutes. I was just about to give up when someone on their way in held it open for me. I used this experience to educate the store clerk. I told her that sometimes disabilities are not always visible , as in the case of m.s. Regardless of the reason a person is struggling just help them. Most people will willing give up their seat but you must ask. Be brave you need to take care of yourself so you can have a better day. In doing so you also give another person the chance to do a good deed and feel good too.

[misslux]

I know you probably don't want to bring one (trust me, I've been there), but have a (collapsible) cane with you at all times if you have debilitating fatigue. That way you can whip it out when needed and also get a seat without question.

Your safety is extremely important so please use an assistive device to prevent yourself from toppling over.

[Fed Up]

I've only been able to walk without a device for about 6 weeks, now.

Still, I need a little help..more so of my fear of 'burning out' and not accomplishing what i need to.

Like you, OP--I definitely have a difficult time asking people to lend me a hand. It is SO DIFFICULT, I write it down and give it to the person, so far, it works--for me.

I visualize how I won't be able to do all I desire and that gives me the urge to ask, even if in writing.

The collapsing cane is a really great idea Misslux; I broke mine with impatience. fed

[Marco]

I'd also suggest you get a cane. Even if you were left standing it would help bear some of your weight and help out your legs.
Otherwise, you might try getting one of those hospital masks and cough a lot until people clear away from you leaving a seat. Well, maybe forget that last one --- stay with the cane.

[kelm10]

comfort

The only way to get comfortable enough with others to become comfortable with your MS is for you to become comfortable with it, yourself.

It comes with time. Keep at it, you can do it.

You have gotten great suggestions from others.

IMO a nice collapsible can will work out quite well.

[Seasha]

Ditto on the collapsible cane idea!!

I've used a cane for close to 5 years now and can't believe how people have been so incredibly kind and helpful when I've needed help.

[Guzzy]

I agree with Kelm - be comfortable with your MS.

Took the plunge a while ago and I told a lady on the bus that I had MS and could I ask her for her seat, because I couldn't stand. She recoiled from me, as if I was about to infect her. It did upset me at the time.

Later on when I was pregnant, visibly so, and in agony I just took to sitting on people. Oh ooops! Sorry! Did I sit on you? Oh dear. You know the ones who take up 2 seats, or who are so kind to their bag but leave people standing, or who sit on the outside of a vacant double seat. Sitting on them by 'accident' made them move over, fast.

I think just take no prisoners, don't be apologetic, just matter or fact say 'I have MS, it might not be visible, but I'm not strong enough to stand on this bus. Can I use your seat?' Good luck. x

[Cat Mom]

I must live in an extremely courteous city! Even with no cane or any visible symptoms, people actually still offer their seat to a lady. Even more surprising, as the route I take the most has lots of high school students, today's youth are usually the first to offer!

Jen

[onlyairfare]

The cane is a good idea, but I also have a handicapped placard for my car that I keep in my purse. If I need to use a handicapped seat on a bus or a train, I pull out the placard and show it to someone sitting in a handicapped seat, saying "Oh are you handicapped too? Do you know where I could find another handicapped seat on this bus/train? I am not able to stand for very long."

Then either that person or someone nearby will offer their seat, and I don't have to get into a discussion about my diagnosis and invisible handicaps.

[Guzzy]

Jen (Cat Mom) yes you must! I'm in awe of your city.
In Dublin I've seen seemingly able-bodied men in suits pointedly look out the window at a heavily-pregnant woman. I gave her my seat because I couldn't bear to see her stand when she was obviously in pain.
Young people take up two seats a lot, rather than have someone sit beside them, and they usually ignore any elderly people struggling to stand.
It's why I gave up on public transport; it made me too tired, angry and exhausted before I even got to my destination.
Theses days I drive and get places without the same hassle. I was brought up to be courteous to others (not that you'd know it from me sitting on people on purpose when pregnant ) but these days in Dublin, it seems it's everyone for themselves.

[HobbitHead]

I think I would just hold up a candy bar and ask who wanted to trade for their seat.

[mctripat]

can't stand on public transportation and handicapped parking

I would try the folding up cane and get a handicapped placard for a car.. even if you do not have a car. Those are the most obvious ways I can think of to let someone know, without speaking you need to sit down.

I always try to hold doors open for people and try to anticipate people needing help... even if I can't see a disability. My husband and I hauled his Dad around in a wheel chair for over 3 years. Also my husband has a small handicapped scooter he uses if we go to Costco or anywhere where a lot of walking is required.

I have problems with my knees and feet but don't always use a handicapped placard. My disability is obvious but that does not mean people are not rude or insensitive. There is a lady here who was trying to catch people driving cars and parking in handicapped spots who were using a placard belonging to someone else... and that person was not in the car... in my state this is illegal. Our placards have our picture on them. But the police ignore this because there is too much felonious crime. Plus now we need to go after people driving and using cell phones....in the metro areas, they can't enforce this state law very well.

People who had state jobs downtown were borrowing placards from friends and family members because handicapped people get to park for free (except at the airport), at state, county, city and public parking lots/garages. Free parking did not necessarily require a handicapped space, either. Most people who work downtown pay to park in a lot. There is very little parallel parking and what there is, is not free. A investigative reporter talked about this on the news... he wanted the state to do something to stop these people from doing this.

[BigA]

I pondered this just last night, not getting a seat on the bus. I held on to the straps to lessen fatigue, but thought of how I might ask for a seat. All I could come up with was a T-shirt that said "fu, I have MS" but that's not good.


I'm a guy, so for now, I'm too proud to ask. When I do sit in the reserved seats, if someone ever did say something, I know what I'd say.

If you're not embarrassed, you might try the following:

1) I need to use a handicapped seat, would anyone mind letting me sit down?

2) I have MS, would someone give up their seat so I can sit down?

In my city, there are handicapped bus passes. You could ask the bus driver to help you find a seat when you get on.


As for sitting next to people, as long as they don't smell bad or look crazy, there is usually a seat next to someone whom the others find too scary to sit next to. Also, if someone is stretched across more than one seat, you can sit your self down beside them. If you sit down and ask "How's it going?" or just explain "Thanks, I have MS and it's exhausting to stand", they're more friendly than you'd imagine.

[football-mom]

I take the lightrail to work. Sometimes in the mornings it is packed - nowhere to sit!! And if I stand all the way into downtown (about 25 minutes) I will just fall over.
This fatigue is invisible... what to do? "Hi, I have MS - can I have your seat?" I'm too shy for that.
Sure, there are disabled accessible seats but they're always taken and if you don't have a cane or wheelchair, folks don't move.
Anyone else have this problem?

Get a foldable cane just for the commute. When you're done you can fold it up and put it in a bag. I keep one for those unexpected weak days.